|
11/28/96
COMMENTARY: Strength in the blink of an eye
By MARK PATINKIN
His wife, Barbara, took me to the room where he was working. He sat in a wheelchair facing two computer screens. His head was held upright by a metal halo. I walked in front of him so he could see me. I grasped his shoulder and said it had been a while. His eyes moved to meet mine, and there was a smile. Those are the only two movements he has left.
I last saw Brian Dickinson several years ago when he still could walk. It was in the lobby of the Journal Building, where we both work as columnists. He spoke of new medications for his illness, amyotrophic lateral sclerosis. It is also known as Lou Gehrig's disease. It damages the body's nerves, first causing weakness, then inability to move.
At the time, Brian had a cane, and was hoping he would not have to use a wheelchair. He also had cuts on his face from a middle-of-the-night fall, a sign things were getting worse.
Months later, when he could no longer walk, I phoned him. His words were slow and slurred. His voice was almost gone. He seemed depressed. The medications were not working out. If it got as bad as he'd told me ALS can get, I imagined he might lose his will to live. It would be a rare person who would not.
If you read this newspaper, you doubtless know the journey of Brian Dickinson. He has chronicled it in the columns he continues to write. This week, I went to see him to hear what thoughts a person who has lost so much might have on Thanksgiving.
But I came for personal reasons, too. Now that I am a father and a husband, in mid-career and near mid-life, I find myself thinking about what manhood is. I wondered if I might find some answers in Brian.
He communicates the same way he writes, on a computer that reads his eye movements. The screen in front of him shows the alphabet in a grid. When he stares at a letter for more than a second or so, it appears on the monitor. It is a slow process. It can take him 12 hours or more over several days to write a column.
If his eyes are tired, or the computer not well-calibrated, there are many false letters, but a visitor quickly gets used to it.
"Gooffd tpo see you," said the screen.
"Good to see you, too, Brian."
Sons returned home
He has three sons, the oldest 28 and twins 26. All came home from out of state after the illness, settling into their childhood rooms, where one remains. But all three still help daily. Barbara cannot easily move her husband, even with a nurse. The sons do that work, lifting Brian from bed to chair in the morning, back again at night.
Jon was there when I arrived. I remembered a story Brian had told me once and asked if this was one of the twins he and Barbara fed in twin highchairs over a plastic sheet, then had to clean the chairs in the shower afterward.
The smile again: "Yep," said the computer.
A moment later, we had to pause while a nurse suctioned some build-up in Brian's throat. He lives on a ventilator. He is also unable to eat, so he receives nutrition through a stomach tube.
In the dozens of columns Brian has written about his illness, I have yet to find a single phrase of complaint. He once did a piece after being put on a ventilator: "Getting used to the idea of life connected to a breathing machine," he wrote. "Not fun; could be worse."
I asked how he stays so upbeat.
On the computer, these words came up: "There are certainly low points."
But this, he added, is the only hand he has to play. It brought to mind another line from a column of his: "Why not try to squeeze the very most, limited though it may well be, out of every day?"
Many faced with smaller losses, I said, do give up; Why not him?
"Strong family support is no. 1," said his monitor. "Also, first rate docs and nurses. Plus, I've still got a lot of writing to do. And I want to see some grandchildren."
"There are still things he enjoys," said his wife Barbara.
On his screen, Brian began a list. Sunrises and classical music. Good jokes and changing seasons. Old movies and books on tape. The chirping of birds and the life of the mind.
I asked how old the two of them are.
"Not telling," said Barbara.
On Brian's screen, the number "5 . . ." appeared.
"You're going to tell," she said, "aren't you."
Onscreen: "Yep . . . 59."
He paused, this time clearly for effect.
"And I don't look a day over 90."
A flash of mischief
He is up around 7, and it takes until 10 for the morning care routine. He then writes for six hours, same spot, same chair.
Does he ever take a break? Goof off?
He doesn't, said Barbara - writes steadily.
I noticed a flash of mischief in Brian's eyes. Suddenly, his screen jingled and showed a full-color slot machine. A video game. Brian began to play it.
Well, said Barbara, maybe an occasional break.
We talked on, then his letters became erratic.
"I think Daddy's slipped," said Jon.
Brian gave a "yes" sign. It took his wife and son five minutes to readjust him. Barbara stood in front, Jon behind. Jon is built like a football player. He is 6 feet tall and weighs 215 pounds. He took off the halo, then nestled his father's head beneath his own chin to support it. He put his arms beneath his dad's and lifted him just right.
"Okay, Pops?"
A smile. Eyes up and down. Thank you, son.
'A lovely plateau'
It was time for the question I'd come to ask. Do they feel reasons this week for thanks?
Barbara answered first. Many, she said, and gave one: "Brian's had no downward change in a year and a half. So we've reached a lovely plateau that we're really grateful for."
And Brian: Does a man on a vent and feeding tube feel gratitude on Thanksgiving?
Yes. He would prefer being well again, but in an odd way, there is even a thanks for the illness.
How so?
It's taught him what's important.
As he began to explain onscreen, a letter at a time, I thought back to the talks I'd had with him before he got sick. Almost always, it was about our ambition as columnists. That was a central priority: Syndication, success, status.
Now, on computer, he gave a different list.
Family. Trust. Love.
This has bonded them, he said. And most important, bonded his sons in a tie that will last long after he's gone.
Then he took control of the talk. How was my wife? The kids?
We chatted for a time, and at last, three hours after I'd gotten there, these words came onscreen.
"Eyesxx tiredxx."
I wished him well.
"See you soon," he said.
I have a lasting image from the visit: Young Jon Dickinson standing by Brian, the son seemingly so powerful, the father so helpless.
But that's not how it is.
"He's taught me a lot about strength," said Jon. "Strength comes in a lot of different forms. He's shown me the important ones."
Never, he said, has he met anyone as strong as Pops.
I don't think I have either.
Mark Patinkin is a Journal-Bulletin columnist.
| 
